Sunday, August 30, 2009

How has MSA affected my life?

For the most part, so far, I am very lucky as I can continue on with what looks like a “normal” life to most people. I can still drive, talk on the phone, walk around the house and far enough to go from a handicapped spot at the grocery to inside for a motorized scooter. I do admit, however, there are a few things that I “feel sorry for myself” over their loss.

Walking along the beach with my husband, holding his hand as my toes dig into the wet sand. Looking for shells and bending over to examine some more closely.

Losing out on the opportunity to climb the cliff dwellings at Bandolier National Monument.

Going to a shopping mall and strolling along stopping at this shop or that one, just looking at things.

Taking a sunrise walk with my dogs through the neighborhood. I would get up at 4:30, walk the dogs until 5 or 5:15, take a shower and be at work by 6 AM. It was beautiful listening to the mockingbirds wake up and sing to the sun.

Walking the trail along a river at a county park where we used to live

Working at “my” library. I miss the people, the easy camaraderie, the ordering of books and other materials, helping people locate information, walking back in the stacks to put my hands on the one book that answers someone’s needs. I admit, I don’t miss the few truly nasty people that one encounters in any public place – people who argue and lie just because they want to get away with breaking the rules.

Working with the City government – the City Manager and other Department Heads. I still have lunch every 2-3 months with one I have known for over 20 years. We sat on many committees together and have become friends, even more so now that I am no longer employed.

The loss of my muscle strength so I am unable to practice yoga as I used to, although I do as much of the stretching and strengthening as I can. The stiffness appears to be winning, however, although I am going to continue fighting it.

I realize that I am very fortunate to not be as far along on this road as some other victims of this disease, and I am grateful for that. I cannot imagine the hardship on the caregivers as the diseases progresses. I have a very tight Advanced Care Directive in order to not put my husband through such an ordeal while he watches me suffer and slip further and further downhill.

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